February 15th, 2007 by 
Jeanette
Matchmakers on Fox Chicago
For some people., Valentine’s Day is filled with sweet candy and beautiful flowers.For others–nothing but wilting memories of romance gone sour.
<em>I know at least one Marfan individual and one Loeys-Dietz individual featured in the Tall Club segment.</em>
Posted in Loeys-Dietz, Marfan individuals, Video with article | 
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July 12th, 2006 by Jeanette
6abc.com: Potential Cure Discovered for Marfan Syndrome
University City - July 10, 2006 - Hundreds of people with Marfan syndrome came from around the country to the University of Pennsylvania over the weekend to hear good news.
Years of genetic research may have yielded a “cure” for the most dangerous complications of this disorder.
Posted in News stories, Video with article, NMF Conferences | No Comments »
July 1st, 2006 by Jeanette
kyw.com - Health: Diagnosing And Treating Marfan Syndrome
CBS 3) PHILADELPHIA Millions of people who are tall and thin could have a potentially deadly disease and not know it. Now there is a breakthrough new treatment that could save lives and Medical Reporter Stephanie Stahl reports on the details.
19-year-old Jessica Jolly is so double jointed she can contort her body in all sorts of ways.
She’s also tall and thin with extra long arms and a narrow face all of which are signs of Marfan syndrome.
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June 15th, 2006 by Jeanette
“Henry Floyd suffers from a genetic disorder known as Marfan syndrome.
It can affect the connective tissue in all over the body, including major organs, like the heart and lungs.
‘I was diagnosed when was three so I am very lucky, if you’re not diagnosed with it, you could feel some heart pains, and yes maybe you could die,’ said Henry.”
Read article
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July 28th, 2005 by Jeanette
ScienCentral: Sudden Killer: “Ruptured aneurysms kill 30 thousand Americans each year, and unfortunately, many people don’t find out they have one until it’s too late.But this ScienCentral News video explains how one woman’s [Carmela Kolman’s] rescue led to countless other lives being saved.”
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June 16th, 2004 by Jeanette
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TheBostonChannel.com - HealthBeat - Show To Raise Awareness About Deadly Disorder: “BOSTON — When the curtain raises on the show ‘RENT’ Tuesday at the Wang Center, some local families are hoping it will also raise awareness about Marfan’s syndrome — a disorder of the connective tissue that could lead to sudden death. ”
“Yamil, 4, is one of those at risk. When he was just 18 months old, his mother recognized he was growing disproportionately, with extra long arms and legs.
“We went to look for Easter shirts and there were no shirts in his size that would reach the appropriate length for his arms,” Yamil’s mother, Suzanne Kouri, said.
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